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Welcome to our site

This site is a place for the people who love a child with a rare disease, disorder or illness… the child, parents, siblings, aunts, uncles, grandparents, guardians, cousins and beloved friends. I am the mother of a son with a rare pediatric disease, JORRP, and the last two years have been a journey for our family and loved ones. We have felt fear and triumph, desperation and hope. I have never felt more supported, or more isolated. I hope to use this website as a place to share information, support and stories. This website and community will grow through your contributions. So please, consider sharing information or a story or building a profile. Thank you. xo, nora

Aspiration

We aspire to provide support for people impacted by rare pediatric diseases by sharing stories, providing information, and building community.

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If you have found this site to be helpful, please consider making a donation. Every dollar supports my work on this website or is applied directly to medical expenses.

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Beliefs & Values 
Topics 
Foundational Thinkers 
Relationships 
Seeking Information 
Health care 
Power 
Psychological dynamics 
Financial impact 
Educational components 
Decision Making 
Communication 
Political 
Technological 
Historical 
Resources 
Stories 
Nora's story 
Online Resources 
Books Ideas 
Specific Rare Diseases 
JORRP 
Propranalol 
Avastin 
Phenylketonuria (PKU)  
Cloverleaf Syndrome 
Tracheomalacia 
Atrovent & 'the mask' 
Humor 
About the author 
FAQ 
Contact Us 
Site Map 
  • Thank you nurses! by: Nora Murphy 
    March 2, 2010, 17:52
  • Looking Back by: Nora Murphy 
    February 6, 2010, 09:01
  • Project Health: Meeting needs with simple ideas by: Nora Murphy 
    February 2, 2010, 17:53
  • SOLVE Fearlessly by: Nora Murphy 
    January 19, 2010, 15:30
Cancer (2)
Coping (3)
  • What is a disease? by: Nora Murphy 
    January 27, 2010, 23:01
  • A New Sense of Normal by: Nora Murphy 
    March 29, 2010, 20:48
  • Our First Donation!! by: Nora Murphy 
    February 5, 2010, 21:11
Events (4)
  • The perspective of family friends by: Nora Murphy 
    June 3, 2010, 19:13
  • friends by: Nora Murphy 
    March 24, 2010, 12:09
  • Thank you nurses! by: Nora Murphy 
    March 2, 2010, 17:52
  • Have you checked out google health yet? by: Nora Murphy 
    March 1, 2010, 11:17
  • power, culture and health care quality by: Nora Murphy 
    February 25, 2010, 13:13
  • Project Health: Meeting needs with simple ideas by: Nora Murphy 
    February 2, 2010, 17:53
  • Communication matters by: Nora Murphy 
    January 17, 2010, 15:00
  • Waiting to see a specialist by: Nora Murphy 
    January 12, 2010, 12:16
hpv (1)
humor (1)
  • If air travel worked like health care by: Nora Murphy 
    January 9, 2010, 21:43
  • Welcome  by: Nora Murphy 
    January 25, 2010, 14:29
JORRP (9)
  • Narrative Medicine by: Nora Murphy 
    February 18, 2010, 11:04
  • The Invitation by: Nora Murphy 
    May 3, 2010, 13:52
  • A New Sense of Normal by: Nora Murphy 
    March 29, 2010, 20:48
  • questions many 4 year olds don't have by: Nora Murphy 
    February 21, 2010, 22:18
  • Narrative Medicine by: Nora Murphy 
    February 18, 2010, 11:04
  • Blog for Rare Disease Day, February 28th by: Nora Murphy 
    February 11, 2010, 13:00
  • Looking Back by: Nora Murphy 
    February 6, 2010, 09:01
  • JORRP, Tracheomalacia and our latest adventure by: Nora Murphy 
    January 29, 2010, 07:05
  • emotionally delayed by: Nora Murphy 
    January 29, 2010, 05:54
  • JORRP: Ayrie's 18th surgery by: Nora Murphy 
    January 6, 2010, 14:29 Hello everyon…
  • what does stridor sound like? by: Nora Murphy 
    March 26, 2010, 22:24
Travel (2)
Voice (2)
  • The Missing Voice of Patients in Drug-Safety Reporting by: Nora Murphy 
    April 30, 2010, 05:04
  • World Voice Day by: Nora Murphy 
    April 14, 2010, 11:09

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